Friday, January 1, 2010

We've had a nice time with family in town this week, although I think it's kind of throwing Jonah for a loop. He's been a lot fussier than usual, especially the last couple evenings. I think he's just overly tired and a little out of routine. He has been eating solids a little better, and yesterday, he ate an entire four ounce jar of baby food from start to finish. I think it was the Earth's Best Organic Summer Veggie Blend. I tasted it. It was disgusting. But I'm glad he liked it. He is also sleeping through the night every third night or so. I'd love for him to start doing it consistently but we'll take what we can get. Now if I would just go to bed before midnight.Yesterday during dressing change he was being super wiggly and rubbed his leg on Matt's mom's arm. He never blistered, but all of a sudden, his whole top layer of skin had come off. He now has a super raw spot about the size of a lemon on his upper leg, right above his knee. Today, he was playing on his pallet on the floor and all of a sudden rolled to his tummy and then kept rolling over, a complete 360, onto his back and again onto his stomach. As he's never done this before, we weren't expecting it, and he ended up running his forehead into Matt's pants. Again, no blister, but the top layer of skin immediately sloughed off. That spot is right on his forehead, about the size of a quarter. His face is in really bad shape again. These photos were taken before that happened.I hate EB with everything in me. I was already having a really hard time before Leah died, and now the things that I had learned to accept and deal with are making me so angry again. I just burst out into tears today when he rolled over and tore the skin off his forehead. He can't even do something "normal" that should be exciting without hurting himself and crying in pain. These poor kids. I just don't get it. Most days I'm like, "Okay this is our life. This is what we do. No big deal. We'll just do it." But I'm now in a phase where I literally think about what EB is, what it really means, and I'm mouth agape in disbelief. When you really think about it, isn't it just one of the craziest things you've ever heard? Some days, I just can't believe this is real.And even though I never got to meet her in person, I miss Leah a lot. And I'm so sad.

I even feel weird posting pictures. It just seems like life should stop for a little while. I remember when Gabe died really wondering how people could go to work, mow their yards, pump gas... didn't they know that time had stopped? Didn't they know my baby had just died? How could they be going on with their normal lives? But you pick up the pieces and somehow learn to move forward. And one day you realize that the physical pain sort of sadness, the take your breath away sadness has eased a little. And eventually you smile through your tears and focus more on the reality of where they are and less on the missing them. But it takes a long time. And the journey hurts.Leah, as I watch Jonah grow, I'll think of you and all the things you'd be doing too if you were here with us. But you've got the better end of the deal. And I can't wait to see you and Gabe and W and Baby L, all with your perfect skin, completely pain free, dancing in the streets of Heaven. We'll pick up the pieces and move forward, but don't think we've forgotten. We'll always carry you with us.Here are some photos from earlier in the week. More to come another night.

I can never say that I know what you are going through. I am amazed at your strength and faith everyday. I can't imagine what you and other parents of children with EB go through, the daily struggles you all face day in and day out. Even your babies struggle with pain. God is watching over you and your little one. I will continue to pray for sweet jonah and your family (as well as the other families). God is good and he hears our prayers. Beautiful photos by the way :0)

I may be seeing things, but Jonah looks so much like my son Nathan. Nathan just turned 1 on Dec 1st. Maybe it's just the blue eyes or something. But I look into Jonah's eyes and see Nathan smiling back at me. I just want to hug these kids and protect them from harm. To make the world safe for them to grow up and hopefull find a cure for this disease

I've been praying for you a lot today, Patrice. When I read about Leah I knew that it would probably be such a huge blow to you too. I never knew about EB until Jonah, and never would have imagined a disease like it existed. It is so unfair that these babies and kids are not able to fully enjoy just being kids. Hang in there. We're praying for you, Matt, and Jonah (and the other EB families that you have introduced us to)!

Patrice Dear, it's OK to feel low and think about these things. It's normal and a type of grief. You are an amazing Mommy to Jonah. I am praying for you. That you can feel the arms of Jesus around you as you go throughout your days. Many of love your little family and are praying.

I've been thinking about Leah and her family and you, Matt and sweet Jonah all day. I cannot imagine the pain they are feeling, and I am constantly amazed at what you endure (by God's grace) each day.

I think I've said this before, but it's really easy for me, sitting here in front of my computer, to underestimate this horrid disease. To think that these are just blisters. When it's SO much more than that. That's why I'm so glad you're so honest with your posts, and that you don't always have your brave face on. EB is wretched, and we need to PRAY PRAY PRAY for a cure. For Jonah. For Tripp. For Samantha. For all EB patients.

God's grace is sufficient for you, and I know He is protecting you, Matt and sweet Jonah. I'm praying fervently for his little body to be healed, and for you to have peace, wisdom and encouragement.

Love from TX,Laura

PS - I LOVE the pics - and Jonah's little chubby cheekers! Congrats on the solids- keep up the good work, Jonah!

I know (well, not really) that it is hard...it's hard enough worrying about a totally healthy child. I'm sorry you have to deal with this extra, huge element to parenting. Despite it all though, your perseverance is a huge testimony and you handle it all very gracefully and in a Godly manner!

Every little foot print leaves a mark on this earth. I haven't been able to think about anything else but little Leah, the pain her family is in right now and how much I hate EB. I don't "know" any on you but my heart just breaks for you and all the little ones. I dream for an EB cure everyday.....

Patrice, please know that I am praying for you guys, and Tripp, and Leah's family. I cannot even imagine the strength and courage you MUST have for dealing with this day in and day out. Much Love-Nancy

I had never heard of EB before I found you from Bri's blog. It is so hard for me to understand why God allows this, but I can still believe that he is good and is aware of each of our pains and struggles. I just wish it wasn't Jonah who has never known the absence of pain.

Happy New Year to you and your family Patrice! I admire your strength and courage with ALL that you have to deal with! Jonah is so lucky to have you and Matt as his parents! You WILL find the strength you need to get through...second by second...minute by minute, hour by hour, day by day, week by week and year by year! You will all continue to be in our prayers!

Thank you for continuing to share what you are feeling and precious pictures of Jonah. You're right. This disease is horrifying. I can't even begin to imagine what you face with your beloved little boy. How much it must hurt when you really think about it. I'm glad God gives you the grace to go through your days with a sense of your new normal most of the time, but I wish God would go ahead and provide a cure. I don't understand so much about what we believe. I guess that's where faith comes in, but I don't know how you manage to have it when you endure something like this.

sweet pictures. i'm still grieving Leah too, and I don't know them..or you guys, personally. She just captured our hearts. I'm praying for Jonah's new wounds to heal fast, and praying that you will be able to grieve and work through these hard emotions that Leah's passing has brought up. May God bring you peace & comfort - all of you. BTW, my son's favorite baby food was that same summer veggie dinner - it's nasty! but glad he found something he liked. so funny that Jonah liked it too : )

my heart breaks for all the EB families and those who know them.I is so hard to understand. I can't even begin to imagine what you go through. i pray for you all the time. I feel like I know ya'll! i hope to meet ya'll in person one day. I am in NC now visiting my husband's family. I should have contacted you sooner! I too am grieving a great loss. My best friend\sis in law's husband was killed in a car crash last New Year's Day. Samarah lost her husband, bff, father to her children and I just weep over not understanding things sometimes. We can't even wrap our minds around why things happen. i think that is where faith comes in hebrews 11:1~ faith is being sure of what we hope for and certain in what we do not see~ i try to remember this~prayers and hugs, and blessings~erin

I've been following your blog, but this is my first time leaving a comment. I am praying for your family and for your sweet baby boy. Your story has been such an inspiration to me, as has been the way that you have handled it with such grace,strength, and faith. My wish is that God blesses you with a healthy happy new year!

I am happy to hear Jonah is eating better. I am crying over the loss of Leah--only know her through the blog- I am praying for her mom & day & other family members to be wrapped in the arms of Jesus. Comfort can only be found through HIM at this time.

I am praying for Jonah to be healed & asking God to give you & Matt the peace & understanding & strength to endure this HORRIBLE disease.

I have followed your blog since Jonah's birth & have met you one time, but I love you like you are my family. Your faith & love of God has had a great impact on my life. I have been praying exceptionally hard for God to comfort you & Matt during this time of mourning Leah, her death brings it to close to home.

Yup. It stinks living in a fallen, sinful world. I hurt for all of you and Leah's family and the others affected by EB, and I'm praying! I do agree that Leah got the best end of the deal. I will continue praying for her loved ones who are hurting so much.

I am so sorry Jonahs skin has sloughed off like that. I hate EB every time I read Samantha Sheridons caring bridge site. It truly is a rotten thing to have and I sooo pray they find a cure real soon!! It just broke my heart to hear about little Leah!Every time I read about the troubles poor Evan is having it breaks my heart! This disease needs a cure! Praying to God!!

You know, EB just sucks. It really does. It is cruel and unforgiving. Aren't we blessed that God is the exact opposite? And I KNOW I am blessed to have "met" you and to be able to pray with you along this road. Jennifer in Southeast, NC

I am so sorry that you and Matt have this burden to bear. I want to rant: "It's not fair!", but then I don't know what is fair. What I do know is that God expects us to bear one another's burdens. I'm not exactly sure what that looks like when I'm not your neighbor and can't bring you chicken soup and sit and hold your hand and pray with you. But since you've reached out into cyber-space and shared your burden, perhaps I can reach out into cyber-space and virtually hold your hand and raise my voice in prayer for all the struggles you are facing. And I know that I am alone. You have a cyber-army of prayer voices, people who are bearing the burden of EB along with you. It's probably one of those things that you would only know its worth if you didn't have it. And so you'll never know.......God Bless all 3 of you.WendyBee

I'm fighting back tears as I read this post. The unfairness of EB is just staggering. No baby should have to endure it. I truly believe that God is love, and that His ways are far above ours, but my human mind wonders how He can allow it. There is so much pain on this earth.My prayers are with you.

I was telling my husband about Jonah, Tripp and Leah last night and he was in disbelief what a horrible disease EB is. I hate EB with every fiber of my being as well. It is not fair to have to live the way Jonah (and you) live. Constant prayers for all of you.

I have not commented until now, but for some reason something inside me told me to make sure I commented. I have followed your story for a while now through another blog, and I love evrything about your blog. I think your an amazing mother to Jonah. Jonah is so hansome and I just love him! I think he is so darn cute....his smile gets me! There is something special about him! Anyways, I can relate to some of the things you write. I also am so sad for Leah and her family (also started reading her blog through yours). I jus contiue to pray and pray! Please know I am thinking of you all!

God put you on my heart tonight. He often does. I HATE EB TOO! I hate it so much. I hate it of for you and I hate it for precious Jonah (who by the way gets cuter every day!)Just wanted you to know I'm praying for you tonight for endurance.

Just today I was telling a friend about how the kids skin hadn't bled this winter due to their eczema when I thought of Jonah. Twice a year my kid's skin bleeds when the seasons change...not daily, weekly or otherwise.

Hope it is ok, but I posted a link to your blog on my blog today when I told the story of Leah. I have done a post on Jonah before, and one on Tripp, but today was about Leah, but a lot of mention was made to you guys. You are in my thoughts and prayers as you sort though the loss of LEah!

Hi Patrice: Thank you for the loving words for Leah. I know that this is God's will, but it sure hurts like he**. Leah is finally pain free and flashing that beautiful smile again. We will continue to pray for Jonah and for you and Matt. We will miss her so much. We hate EB and will continue to do all we can to find a cure so that no family will ever feel this pain. Take care and thanks again. We love you guys so much. Love Leah's Nana

I would try to say something sweet & encouraging, but the truth is ... you're right. EB is horrible! It's not fair!! I was so happy to read that Jonah rolled over but then that was quickly followed by how wrong it is that something normal can hurt him so bad. Your family and all EB families deserve a miracle! Continuing to pray!